The House of Commons recently debated the future of the Transforming Care programme[1]. Concerns were raised that the Programme was unlikely to realise the ambitions set out in the Building the Right Support strategy before it ends in 2019.

These ambitions are to develop more community services for people with learning disabilities and/or autism, who display behaviours that challenge, including those with a mental health condition, and to close some inpatient facilities.

Clearly these ambitions are laudable in the wake of the Winterbourne View Scandal. However, the debate highlighted that, for a variety of reasons, including lack of appropriate alternative care in the community, there are a substantial number of people with learning disabilities and /or autism who remain trapped in, and continue to be inappropriately admitted to, Assessment and Treatment Units rather than living with support in the community, despite the impending 2019 deadline set out in Building the Right Support.

What does not appear to have been discussed, is the role that CQC has to play in this situation.

In certain circumstances, CQC’s rigid application of Registering the Right Support appears to be compounding the problem.

Registering the Right Support (June 2017) is CQC’s policy on registration and variations for Providers supporting people with a learning disability or autism. It was designed to ensure that registration decisions are developed and designed in line with Building the Right Support and other best practice guidance.

Feedback from Providers suggests that, notwithstanding statements to the contrary in Registering the Right support, CQC are adopting a blanket position where they refuse to register services for people with learning disabilities and/or autism which have any more than 6 beds. They are also refusing applications to add 1 or 2 beds to already small existing services.

Registering the Right Support states that:

We will not adopt ‘six’ as a rigid rule for providers of any service for people with a learning disability and/or autism. We may register providers who have services that are small scale, but accommodate more than six people, where providers are able to demonstrate that they follow all of the principles and values in Building the Right Support guidance, and meet the fundamental standards and other relevant regulations. We know that the provision of care to people with a learning disability and/or autism is complex. There are multiple factors that affect outcomes for individuals. We therefore do not consider the size of service in isolation from other considerations, which include, but are not limited to: skills of staff; effectiveness of management; and evidence base for the proposed care model. As such, we recognise the need to have a measure of flexibility in regards to the size of services.”

Nevertheless, the experience of Providers is that, CQC appear to be allowing no measure of flexibility whatsoever.

Numerous established and reputable Providers of learning disability services with a proven track record of delivering high quality person centred care for people with learning disabilities or autism are being refused registration of new services or small numbers of additional beds by CQC. The reason being that CQC consider they do not comply with the principles of Registering the Right Support.

This is despite the fact that, the vast majority of these Providers can demonstrate that they would be compliant.

Refusals have been made to Providers planning small scale, person centred care, with easy access to and inclusion in local communities. These Providers are often already achieving very good outcomes for Clients in similar settings and promote enablement, independence, choice and inclusion. They have proven and effective systems in place to prevent and respond to crisis situations, including training in positive behaviour support, safe use of restrictive interventions, on call processes, and learning from incidents.

Yet, whilst the appear to satisfy the requirements of CQC’s guidance they are still being refused registration or variations to allow them to add small numbers of additional beds to their provision. Many of these Providers have individuals waiting to take up placements who actively want to be placed with them and for whom CQC registration is the only obstacle in the way. The only remaining reason for CQC’s refusals seems to be that they are seeking to develop services which go beyond the preferred model of 6 beds or less adopted by CQC.

This is a clear fettering of discretion and is contrary to what is written in the guidance. It is capable of challenge, but it shouldn’t have to be. CQC ought to adopt a rational approach to application of the guidance on a case by case basis.

In the meantime, Providers have to put up with the delay and expense of taking the matter to the Tribunal whilst people with learning disabilities and/or autism and their families experience the human cost of being stuck in unsuitable placements or institutions often far from their families and out of their local area. This is contrary to the underpinning principles set out in Building the Right Support.

Yes, the national model seeks smaller community- based services however, there cannot be a one size fits all approach.

It is quite correct that for many people, small scale supported living will be the right decision. We hope that these services will continue to be developed to meet the demand required.  However, they will not be the correct type of accommodation for every individual with learning disabilities and/or autism. Some will have levels of need such that supported living is not appropriate for them. Others simply may not want to live in supported living and are actively seeking residential care with small groups of people. Particularly at those services where they see other residents receiving high quality person centred care and achieving good outcomes.

What seems to be being forgotten is that people should be offered a choice of housing. Of course, this should include small-scale supported living, however, this is not the only type of provision that should be offered. Decisions should be based on what is right for each individual.

The regulator ought not to be able to dictate that 8 or 9 bedded services are not appropriate in every case. Many of these are able to demonstrate first and foremost that they achieve excellent outcomes and that they follow all of the principles and values in Building the Right Support guidance and meet the fundamental standards and other relevant regulations.

This reluctance to register anything other than a 6 bedded service must be addressed in order to ensure real choice for people with learning disabilities and/or autism and to ensure that people are not left in unsuitable placements or institutions for any longer than they need to be.

[1] (HC Deb 5 July 2018, Volume 644, cols 544 – 587).